General

I was diagnosed with CLL in December 2003, in my mid 30’s, following an unrelated hospital admission.

I am seen by Professor Moss at the Queen Elizabeth Hospital in Birmingham. He arranged for me to have all the fashionable prognostic tests so I know that I have mutated IgVh, CD38 –ve, Zap 70 +ve, normal FISH. Nobody can tell me what that all adds up to! I refused to have any CT scans due to radiation risk, but I have had MRI and ultrasound which showed enlarged LNs around my pancreas to go with the arm pit, neck and groin nodes I already knew about.

I have been w&w until Jan 08 when I started FCR. Reasons for initiating treatment were low Hb and massively enlarged tonsils that the ENT surgeon thought could have been lymphoma (for the record it was just the CLL) and a massively enlarged spleen that was giving me some pain. My white count had also been making some alarming jumps for some time, at the time of treatment it was about 130k. Prof Moss had been talking about treatment for some time before I started which gave us time to apply for the rituximab from the primary care trust. I am one of only a handful of patients at the QE to have FCR as a front line treatment.

Treatment side effects have been minimal, nausea/vomiting for a few days a month and some tiredness, but nothing else to speak of. I actually feel so much better in myself than before I started treatment, I hadn’t realised how much the CLL had been affecting my energy levels.

My counts swung into the normal range after the first cycle of treatment, my spleen and enlarged LNs disappeared and my marrow is showing signs of recovery (Hb and platelets climbing). I have now had three cycles of FCR, with another three to go. I am due to have a bone marrow test next week to see how much CLL remains there, with a view to finishing treatment early if I have minimal disease residue.

CLL has certainly changed my life, but not in a completely negative way. I work in a hospital with patients who have truly terrible diseases and so I actually feel lucky to have got away with my, relatively benign, form of CLL. I don’t know what the future holds, but there’s no point in spoiling the present worrying about it.